Help with raising funds for Prof. Lipkin's study

[Nielk]

Personally though, I think that big money like that - quickly can only come from the government. We need a concerted effort from all the various ME/CFS patient groups and advocates to come together on this to petition the government for adequate funding. The groups might have differences but with this point I think that we can all agree - the government is failing us!!!

 

[vli]

Thx Dolphin!

 

[Nielk]

https://www.facebook.com/groups/115200951912652/

Yes - sorry, I forgot to include the link I'm going on one hour of sleep last night.

 

[Dolphin]

Personally though, I think that big money like that - quickly can only come from the government. We need a concerted effort from all the various ME/CFS patient groups and advocates to come together on this to petition the government for adequate funding. The groups might have differences but with this point I think that we can all agree - the government is failing us!!!

You could be right in this case, as it may be more expensive than most studies, although it would be good to know what sort of money is involved.
I'd like to see people trying to raise money continuously around the world and then charities might be able to step in if researchers can't get funding through grants, as is likely to sometimes be the case even if we get a "fair" chunk (only a percentage of grants will get passed).

 

[vli]

Personally though, I think that big money like that - quickly can only come from the government. We need a concerted effort from all the various ME/CFS patient groups and advocates to come together on this to petition the government for adequate funding. The groups might have differences but with this point I think that we can all agree - the government is failing us!!!

I agree with you completely actually. But it's depressing to remember that a) lipkin wouldn't even be DOING this study if not for the CFI in the first place--not federal money and b) people here've reported being sick for two decades or more and seen no successes with our disease getting more gov funding. Why is this????? Perhaps I should ask more precisely: is it because we haven't had a solid project that tries to find the cause of our illness to focus our efforts on , UNTIL NOW??? I think one major downfall for efforts to persuade (even with my zero experience with it) is that 'til now we haven't had a single high profile researcher to get behind and shame the gov into giving us funds, so to speak.

 

[Dolphin]

I agree with you completely actually. But it's depressing to remember that a) lipkin wouldn't even be DOING this study if not for the CFI in the first place--not federal money and b) people here've reported being sick for two decades or more and seen no successes with our disease getting more gov funding. Why is this????? Perhaps I should ask more precisely: is it because we haven't had a solid project that tries to find the cause of our illness to focus our efforts on , UNTIL NOW??? I think one major downfall for efforts to persuade (even with my zero experience with it) is that 'til now we haven't had a single high profile researcher to get behind and shame the gov into giving us funds, so to speak.

It's a difficult question to answer.

There has been some lobbying in the US in the past and the CAA even paid a lobbyist (I think a low six figure sum each year) for maybe a decade?
They also had lobby days where they would have a training day the day before and then a few dozen people would go around politicians in Washington DC.
I also recall them co-ordinating e-mail campaigns.

The CAA have moved away from lobbying in the last few years.

I also recall one or two photos of protests in Washington DC around the mid-1990s I think it was.

 

[vli]

Ok, thanks for that Dolphin, I guess my knowledge of those activities is a bit hazy since I was in high school in 1999 and didn't get sick until I was 19.

 

[Dolphin]

Ok, thanks for that Dolphin, I guess my knowledge of those activities is a bit hazy since I was in high school in 1999 and didn't get sick until I was 19.

I think most people don't know much about the politics of the illness (what lobbying might have been done, etc.) from before they got diagnosed. It's not a high-profile illness.

I got ill in 1989 and diagnosed back in 1994 (and also read some old stuff from before that (1994), mainly relating to stuff in the Great Britain and Ireland, but there are some unusual circumstances in my case in terms of why I'd read back).

However, I didn't follow US stuff that closely in the 1990s. At that stage, my mum did most of the reading of stuff that came in e.g. CAA magazine. Most of what I know from the US then was the internet. But I didn't start following much in the US on the internet till around 1998 (so I'm not an expert on the US in the 1990s, although have picked up some information from discussions over the years).

CFSCC/CFSAC meetings were not broadcast till 2008 or 2009 - I think few people would have a good knowledge of what happened at them before that.

 

[aimossy]

Right so I had to do something, donated to phoenix rising, health rising and my own community society and the research here we have supported. I wanted to make a donation to invest in ME today and now I am irrationally annoyed that something is up with the server and wont find the page on the net. have no idea why its made me feel so annoyed! lol

just want to say,im learning and learning from senior members,its great and thankyou, you are all full of knowledge and info and support.thanks

 

[Dolphin]

Right so I had to do something, donated to phoenix rising, health rising and my own community society and the research here we have supported. I wanted to make a donation to invest in ME today and now I am irrationally annoyed that something is up with the server and wont find the page on the net. have no idea why its made me feel so annoyed! lol

Thanks aimossy.

 

[Sasha]

Right so I had to do something, donated to phoenix rising, health rising and my own community society and the research here we have supported. I wanted to make a donation to invest in ME today and now I am irrationally annoyed that something is up with the server and wont find the page on the net. have no idea why its made me feel so annoyed! lol

Good for you! If everyone did what you're doing, we'd have millions. I hope other people will follow your example.


If it's the IiME Rituximab trial you want to donate to, here's the Justgiving link:

https://www.justgiving.com/ritux4meuk

 

[aimossy]

Once ive done a donation to invest in ME ill check that one out properly sasha thankyou.
ill bloody donate to anything that is quality research and not just once!. time for action now while research is finally hotting up.i just gotta learn lots from you guys to get myself in the know of whats happening everywhere and pass it on.

You know that is just about perfect! you have a thread on the forum here that has info about some specific studies, and then links at the bottom of the info that sends you to the place you can donate to. just have it all real obvious/easy to come across.

 

[Sasha]

Once ive done a donation to invest in ME ill check that one out properly sasha thankyou.

Maybe I confused you with my abbreviation! IiME = Invest in ME. That link is to donate specifically to the UK Rituximab trial. This link:

https://www.justgiving.com/investinm-e

takes you to all their pages on Justgiving, which will include some involving their general fund. I like to donate to strangers' fundraising pages sometimes, just for fun - they have quite a few people there fundraising for them on their individual pages.

ill bloody donate to anything that is quality research and not just once!. time for action now while research is finally hotting up.i just gotta learn lots from you guys to get myself in the know of whats happening everywhere and pass it on.

You know that is just about perfect! you have a thread on the forum here that has info about some specific studies, and then links at the bottom of the info that sends you to the place you can donate to. just have it all real obvious/easy to come across.

Don't be too hard on yourself - I'd never noticed that!

 

[xchocoholic]

Are you kidding me ? Let our governments divert the monies going to pysch research
to this study.

Or better yet, teach them how to run a study using valid criteria.

Why encourage this type of wasteful spending ?

edited to say our governments not them. Lol. I use the term them for government
without even thinking others won't know who they are.

 

[aimossy]

I will check the invest in me pages out properly sasha, thought money to them would go over a few areas of research.not just rituximab.Thanks for the info and tips its helpful cos I need to troll the sight properly! I do have problems taking it all in and miss stuff which im sure most struggle with. new learning takes ages to sink in.
xchocoholic, im not sure what you are referring to but I wont be donating monies to psych research(especially not cbt or get) You may have been referring to some other posts and not mine or sasha
I am yet to come across any good neuro psych cognitive testing papers as of yet tho which I would find interesting.
thanks

 

[Dolphin]

I will check the invest in me pages out properly sasha, thought money to them would go over a few areas of research.not just rituximab.

One does have the option of specifically giving money for the Rituximab trial pot. But I'm sure they appreciate unspecified donations also. They are an all-volunteer organisation.

 

[xchocoholic]

Our governments keep wasting money on cfs psych studies. And they're just now
acknowledging that cfs is an umbrella term.

So why not
expect them to get a handle on this ? This has gone on long enough.

 

[Dolphin]

Our governments keep wasting money on cfs psych studies. And they're just now
acknowledging that cfs is an umbrella term.

So why not
expect them to get a handle on this ? This has gone on long enough.

I think there's a difference between the US and some other countries.

In some countries, most of government-funded research is psych studies.

In the US, the percentage is much smaller.

Also, Leonard Jason, for example, is a recipient of some of this research money.

My guess is that in a lot of conditions, psych studies get a percentage.

 

[xchocoholic]

But the real cfs/me isn't a psychological illness so the money is being wasted.

Sorry to sound argumentative. It's the system that I'm frustrated with.

 

[aimossy]

I pretty much like all of what invest in me are doing with their research funding and what the whole organisation is up to and made happen.its a go for me to put some donations into their pots.